Organ donation is a ‘taboo’ that needs to be addressed, says woman who lost her son and husband

Anna-Louise Bates has a special bond with little Roman, and when she says he has a “magical heart,” she’s not exaggerating.

His heart is, in fact, that of his son Fraser, who died after being hit by a car on a Saturday 10 years ago.

Mrs Bates lost her husband Stuart and seven-year-old Fraser after the accident while crossing the road in Talbot Green, Rhondda Cynon Taf.

It is also 10 years since a landmark organ donation law was introduced in Wales, which aims to increase the number of donors.

One academic said it has had little effect and Mrs Bates wants more to be done to break the taboo around donation and help save children like Roman.

A charity set up by Mrs Bates, Believe Organ Donation Support, recently opened a memorial garden at Thornhill Cemetery, Cardiff, which has fruit trees and grass mounds shaped like organs such as the heart, liver and kidneys.

“I now have a very close bond with Roman’s mother and she is incredibly supportive,” she said.

“We have this magical heart that unites us and for him to be there with what I call Roman’s heart… and he continues that joy and fight very hard.”

Ms Bates added that it is “simply phenomenal” that Fraser has made such a difference by donating his organs, and shows that “the heart really can keep going.”

Roman’s mother Zoe described the agonizing 10-month wait for a heart transplant and the “emotional rollercoaster” as the family didn’t think it would happen until they got the call.

Wales was the first UK nation to adopt opt-out legislation on 1 December 2015, which presupposes a person’s consent to donate their organs when they die, unless they or their family have indicated otherwise.

The organ donor consent rate rose about 15% during the first three years of the opt-out law, but last year fell to its lowest level in a decade.

Ms Bates believes the stigma around the topic is an issue and it is important for people to have potentially difficult conversations with their loved ones.

Her husband and son died just days after the legislation was introduced.

The Bates family, including their then three-year-old daughter Elizabeth, had just attended a Christmas party.

IT program director Stuart, 43, was pronounced dead at the scene and Fraser was taken to hospital and later transferred to Bristol Children’s Hospital, where he died from head injuries.

Mrs Bates said she had spoken to her husband about being placed on the organ donor register less than three weeks earlier.

This conversation meant that when he was approached about donating his organs “it was the only moment in that 24-hour period where I didn’t have to think and I knew what they would have wanted me to do.”

“I’m so grateful that even in that madness, I was able to fulfill his wishes,” she said.

Mrs Bates said the loss of her husband and son was “everyone’s worst nightmare” and “it still doesn’t seem real, 10 years later”.

“One minute you have your lovely family of four and the next they’re asking you these questions,” he added.

Mrs Bates said she did not expect to be asked for consent to organ donation as she thought the “soft” opt-out legislation meant this was not necessary.

He said he feared others would think the same and this meant there were fewer conversations about the topic.

“What we really need to tell people is that just because the law has changed doesn’t mean this is as easy as you might think,” he said.

“These conversations desperately need to happen.

“It scares me to think what it would have been like or what emotions I would have gone through if I hadn’t had that conversation with Stu.”

This was part of the reason he set up his charity, describing organ donation as a “taboo topic” and that people were “too scared to talk about it”.

Bates said that in his experience, children tended to view organ donation as “a gift of life,” while adults may have avoided talking about it because they associated it with death.

The consent rate for organ donors has now fallen to its lowest level in a decade.

The NHS Blood and Transplant service (NHSBT) said presumed consent was not a silver bullet to bridge the gap between donation and transplant.

The Covid pandemic, fewer major media campaigns, limited resources and possible distrust in the health service were some of the reasons given for the reduction in recent years.

Leah McLaughlin, a health scientist at Bangor University, Gwynedd, said: “We also need more messages integrated into everyday life so that it becomes normal end-of-life care, which is what NHSBT is trying to do, but we need the infrastructure to support those messages.”